Reunited

After spending the week at grandma's nursing her fever, Cayla is finally home (with an occasional cough). The siblings missed each other so much they couldn't wait to spend time together. I guessed a brief playtime between them would do more good than harm. See how they laughed and held each other's hand. Such a beautiful moment to cherish.

A short recap on C's last discharge. I had completed the necessary hands-on trainings with the home-care nurses and came home with a truckload of machines. Here are our latest additions:

From Top (L to R): Suction machine, oximeter, BIPAP, humidifier

Bought a trolley from IKEA that perfectly accommodates the equipment. It now occupies the space which used to be my bedside drawer.

Resuscitator, syringes, tubes, masks, gloves, sanitizers etc

The low built-in storage next to the trolley now stores the consumables... lots of them! No more space for oxygen cylinder so we had to keep it elsewhere. 

Apart from the daily suctioning, C has gradually resumed his oral feed and soft diet (moderately blended meat and vegetables with porridge). He has also been scheduled for another videofluoroscopy session in early August to re-assess his ability to swallow. We hope C maintains his health and continues to enjoy his privilege to eat.

Next to consider - a proper stroller to ferry C and his equipment. Costly!! >_<

Big smile from Caelen! Lots of love ♡ 

Caring For Caelen

Today is my 8th day at the hospital possibly many more days to go. Seems indefinitely delayed for many reasons.

I ate, bathed, slept and breathed hospital air. Ward 65 is my home now and frankly I am so in need of a good grooming session. Sadly, during my stay here, I only had a 30-min bonding session with Cayla when she visited.

Learning how to connect the parts

C checked in last Tuesday and was immediately hooked up and tubed. Over the last week, he made good progress and was slowly off drip, oxygen, day BIPAP support and therapies. Unfortunately C was traumatized by the never-ending suctioning and soon refused to feed orally thus the need for NG tube. In order for C to be discharged, I need to learn how to suction, tube-feed, intubate and change his NG tube (successfully under supervision, 3 times, once each day which equates to an additional 3-day stay in the hospital). So poor mommy here has been taking up hands-on sessions with the homecare team (enthusiastically) to speed up C's discharge. The enthusiasm is somewhat dampened by many hurdles along the way (i) the need for more than 10k worth of new machines e.g. BIPAP, humidifier, desktop oximeter, suction machine, oxygen tank, a long list of consumables. The acquisition of which requires time and this further delays his discharge (ii) the time required to complete my hands-on (iii) the tons of information on patient care, machine usage and care etc to digest (iv) meeting with medical social work to discuss on possible funding (if we are even eligible in the first place).

First time intubating (inserting tube from nostril to stomach) and suctioning C was rather successful (if you could just ignore his screams and cries during the process). Luckily I'm not one who hesitate at the slightest protest or squirms at the sight of blood. I'm still hoping for the earliest possible discharge. Till then...